Day +234

Yesterday was Ryan's cancerversary. We decided that we were going to let it pass without much acknowledgement, December 28th will be a day that is forever etched into my brain. Looking back on the last 365 days we have experineced the highs and the lows of the human condition but we've always found a way to make the best of it all. It has officially been over six months since Ryan's transplant and he is still 100% donor!!!!! Time seems to just disappear now a days. We have days filled with a healthy, strong, wildly independent toddler who is giving us a run for our money. On December 11th he had his Broviac (chest catheter) removed, which is a major milestone and he is loving bath time more than ever. He has also been totally weaned off of his immune suppression medicine, which has allowed other medicines to start being weaned. With any luck by his transplant anniversary we will be totally free of daily meds (he currently is still on 6 meds, twice a day) but we are taking that all one day at a time. Some days are still rough; you worry about every little bump and I find myself checking his temperature multiple times a day even when he's not feeling warm but it's slowly feeling like we're on an even keel. The holidays were good to us, it was nice to get a break and be able to visit with family. We are going to be participating in the Be The Match Walk/Run Tampa on March 8th. If anyone wants to join the team or make a donation the team page will be posted at the bottom of the blog. I almost forgot our other big news, Ryan's counts at his appointment this week are the best they have been so far! His white count was 3.1, hemoglobin 11.8, platelets were 240!!! So with his positive progress we're now officially going to appointments EVERY OTHER WEEK. This may not seem like much to anyone from the outside world but going from weekly to biweekly visits is a major step. It's way past my bedtime so I'm glad I finally took some time to update everyone, we feel so blessed to have such amazing support. Have a safe, happy, healthy 2014!

Be The Match Walk/Run Tampa (Donate or Join Team)

Day +166

It has been entirely too long since I have posted an update. Since I last posted we have moved out of the Ronald McDonald House, YAY!!! We are almost completely settled into our own place in Clearwater and things have been great. Ryan's counts have slowly been drifting down for the last few weeks so we have been doing weekly doses of Nupagen (which helps push more healthy cells out of his marrow). There is no clear reason why his white count has been down other than the idea that he may have an infection that isn't showing up on any of his blood work or the other tests that he has taken. The marrow aspiration and blood work they have done shows that he is still 100% donor cells which is AMAZING. He has also turning into this stellar little man right in front of our eyes; walking, jabbering, and his motor skills blow my mind on a daily basis. There has been so much craziness for so long that we forget sometimes that he is still just a toddler that will do crazy toddler things like trying to plug a USB into the outlet. Overall we feel so fortunate to have such an amazing support system behind us and that now we have our own space Ryan seems to be flourishing. I have decided to become a volunteer ambassador for Be The Match which will mean that I will be helping with swab drives and helping to spread the word about marrow donation, so if you have any questions I'm your girl. Since he is finally fast asleep I think it's time for me to get to bed myself. Thanks for keeping tabs on us and I promise to try and keep everyone a little better updated.

Day +102

We were readmitted late Thursday night early Friday morning when one of the Oncologists called to tell us that the cultures from his line being broken Wednesday morning came back positive. They have given him continuous antibiotics since coming in. He had a bone marrow aspirate this morning to confirm that he is totally donor and that he has shed his KRAS mutation which caused his monosomy 7. They are currently waiting for authorization for the medicine for the infection in his line because it is $6,000 a dose, they had to wait for it to grow to know what it was (Staph). There is a very common issue of lines getting infected especially in infant / toddlers. Sorry if my thoughts are muddled I wanted to post while the little stinker was eating his dinner. Speaking of being a stinker he has officially figured out how to take off his diaper all on his own which is another host of problems that we had totally forgotten about healthy kids doing crazy things. I will try to get on again soon to let everyone know how we are doing but Ryan is holding strong as always we have been so lucky to have such a strong soldier! 

Day + 98

Sorry for the lack of updates. I started working again on Monday and Dan is still working full time so having a spare minute isn't easy. Ryan is doing great, his counts have been holding up well. We had a minor incident yesterday with his central line but that got fixed immediately. I will try to post an update in the next few days with lots of info.

Day +88

Another eventful week for us, Ryan's EBV count is back under 250 copies but they are going to finish the four week treatment to be sure that there isn't any lingering virus. His counts have been good, his ANC was 2410 today. Lots of hours spent in the hospital the last few weeks but every second we spend is another second closer we are to having our old Ryan back better than brand new. I should be starting work on Monday the 12th and could not be more excited about it, hopefully I can regain my social skills to an adequate level quickly! We are also looking to move into an apartment around the end of the month which will be such a wonderful change for us. The Ronald McDonald House has been amazing for us but we feel like to healing process will only be complete once we can be in our own space with our own belongings. I feel like there was so much more to share with you but my brain has gone blank. Have a blessed week everyone.

Day +80.

Just wanted to update everyone on why we got readmitted. On Friday we had a clinic appointment for Ryan to get an IVIG infusion which essentially gives him a fake immune system because his is currently suppressed. While he was getting the infusion he took a nap all cuddled up and covered in a blanket and got a fever of 38.2 on the temporal thermometer (everything in the hospital is in Celsius) but when they checked his arm pit on the regular thermometer it was 37.8. Anything above 38 they admit you and administer antibiotics immediately.  He got his doses of Meropenem (antibiotic) and they took blood cultures to be sure there wasn't an underlying infection. EBV or mono is carried in the B Cells in the blood which in healthy people can be kept under better control by the T Cells but because of the chemo regimen that Ryan had and that he is on immuno suppressants his body isn't fighting the virus appropriately. His EBV count jumped from 650 to 3,200 from Monday to Wednesday so they had given him Rituximab (which sheds the B Cells) that brought his count down to 990. They are keeping an eye on it but we have lowered his steroid level as well that should help his body to fight the infection more itself. Other than the virus Ryan is in good shape, he is eating like a miniature horse! I was asking today about the possibility of getting a port instead of his Broviac central line and his Oncologist told me that if he keeps up eating like he is and doesn't have any more fevers that we should be able to take it out once we get down to at least one weekly visits!!! So exciting. We are so lucky that he is doing so well, it is not typical for kids with JMML to have such positive outcomes. Well, I finally have a chance to get some uninterrupted sleep so I am going to take it! Have a wonderful week and I will update again as soon as I learn of anything new. 

Day +78.

So we have been readmitted. Ryan had a slight fever and with the EBV they want to play it safe. Hopefully this will only be for the weekend but please think of us over the next few days.

Day +75.

So Ryan now has about 650 copies per mL of EBV (Mono). We will be back in the infusion center for another 7 hours tomorrow to get treatment before this gets out of control. According to my information 500 copies is enough to be positive for mono but it doesn't get dangerous until 50,000. Just another speed bump we will have to laugh at later. When you think positive thoughts for Ryan just think of all of these bad germs leaving his body and having a barrier from any new yucky ones. Thank you all for the support.

Day + 74.

Ryan got platelets today and will be getting a blood transfusion tomorrow. Everything is going well but his counts have dropped some. He is so ready to get out and explore the world. I will update tomorrow if they have any answers for me.

We're on the NEWS!!!

Priority Health: Bone marrow transplant saves boy's life

Day +70

Ryan is FINALLY not Rhinovirus positive. NO MORE COLD!!! Yay. The rest of his results from labs should be in this afternoon, including his EBV results. The amount that was detected before was so minimal they aren't even worried about it. Again, have an excellent weekend everyone!

Day +69

Another great appointment today. His hemoglobin is right on the edge of needing to get a transfusion but we're going to wait out the weekend to get his marrow to start making some more red blood cells. He did have a little bit of EBV (mono) detected in his last blood draw so they are going to check it again. If the level gets higher they will treat him for it, they are unsure if he got it from his donor's cells or if he picked it up in his travels. Hope everyone has a great weekend!

T-shirt Order Sheet

Customink Order Sheet

Day + 67

Day +67. Our visit yesterday went well, we had to get some platelets which I was anticipating. Today Dan has off from work and we don't have any clinic visits so weather permitting I think we will go find something fun to do. It will be nice to spend some time as a whole again today. As our nurse said yesterday having an eventful-free week would be wonderful.

It's been too long.

I want to start with an apology for the lack of updates, it's been a very crazy few weeks. Ryan's birthday was amazing. I was worried being in the hospital that he wouldn't get to enjoy the day as he should but the nurses had everything worked out. He got to smash some cake, open gifts, and even got serenaded by almost all of his favorite nurses. I'll have to make a photo album of everything that's happened so far on our journey and post it with my next update. Right around Ryan's birthday he started having signs of graph vs host disease (GVHD) which is good and bad. The school of thought is that if you have a little GVHD you are less likely to relapse which is amazing. The issue we had was that the little rash ended up spreading to 90% of his body and began to cause lower GI issues. Luckily we have amazing doctors whom I trust wholly who got Ryan back on track. He is on a few different medicines that help combat the rash which have helped it clear up entirely. He is on a dose of steroids which we are beginning to wean him off of. We were discharged July 1st and sent out to spread our wings and we have soared. Ryan's counts have been stellar and we have only needed to get one transfusion of platelets thus far. Daily there is a lot of administering medications and we even give him IV fluids overnight that surprises me that Ryan does so well with, he just opens his mouth and takes them now. Normally when you leave the hospital you have clinic visits three times a week but because he is doing so well we only need to come in Mondays and Thursdays. Luckily we had some time the last few days as a family to spend together which has been so amazing. Ryan's started walking, Dan started a job, I should find out this week about a great career opportunity, things seem to be on the upswing... finally. I don't want to jinx us but it feels nice to be able to think about having your feet on the ground. Today we tested the waters and went to the aquarium and he kept his mask on the whole time! He had a blast watching the other kids and was even pointing out different fish / animals. It feels like we took a baby into the hospital and got back a little man. I just want to thank everyone again for all of the support you given. We are amazed at the amount of people who read this blog especially the vast span of the globe that you are reading this from. Below I have posted the links for Ryan's birthday wishlist and our page on GiveForward. I am also in the process of setting up a fundraiser in Maine if anyone is interested in donating a gift card / product to be raffled off or if you have some free time to do some organizing for me would be AMAZING. We are also going to do another run of t shirts which I will attempt to set up tomorrow. It's time for me to try and get some sleep but thank you again from the bottom of my heart! 

Ryan's Army on Facebook

Ryan's Amazon Birthday Wishlist

GiveForward Site

Day +43

Ryan's birthday is tomorrow, we are so excited to celebrate! This weekend will be a lot of little adjustments and monitoring because his counts have been bouncing around. His bloodwork got sent out on Wednesday to check his STR's, hopefully we get the results back today but it probably will not be until next week. I'm going to make a wishlist on Amazon for his birthday if anyone wants to get him gifts. I'll update once we get results. Have a great weekend and welcome to Summer!

Day +37

Time is like a black hole here, you come out of the other side unsure if it has been 15 minutes or 15 days. Everything is going VERY well. Ryan's belly has finally gone back down to almost normal size and his weight is normalizing as well. The rash he had has already cleared up with a little boost in his immuno suppressant. We are now just waiting for his body to start producing enough platelets for us to get discharged. His appetite has gotten better slowly with the abdominal swelling going down. They have started weaning him off of his morphine which has gone well, he has to be at a manageable level to leave. Tomorrow is Father's Day and I am lucky to say that Ryan has the best Dad in the whole world. Have a great weekend everyone!

Day +34

Ryan's had an eventful afternoon. We finally got his drain placed, ND tube put in, and bone marrow aspiration done. They removed about 100cc of the fluid during the insertion. The doctor said that the fluid they drained was clear which is a great sign. Instead of taking it all at once it will be about 100cc every 6 hours until it is back to a level they are comfortable with. We will begin tube feeding some breast milk tomorrow to try and kick start his digestive system again. Once he is having good intake of breast milk and he begins making his own platelets we will be discharged. Fingers crossed. The bone marrow aspiration will take a week for results and they have sent a sample to the specialist in California to help them do research to help find a cause / cure for JMML. Well I need to try to get some sleep now. Keep us in your thoughts!

Day +33

Dan and I went to a job fair so Ryan got a visit from his abuelos so we could get a break together. After another day of delays Ryan's doctors have been trying everything they can think of but he is still retaining a lot of fluid (basically 15% of his body weight) in his abdomen. If his weight and abdominal girth doesn't go down by morning they will be putting in a shunt to drain the excess fluid. We also noticed the other night that he has developed a rash on his scalp / forehead which has spread a little to his face. The rash is graph vs host disease (GVHD) which is the donors cells realizing that Ryan's cells are not theirs, the school of thought is that this minor rash is a good sign which should actually mean that he is less likely to relapse. He is in amazing spirits, just a little uncomfortable. Keep up the prayers, they are working. There are just a lot of hurdles on the track to recovery from transplant.

Day +32

 The bone marrow aspiration is postponed again today. Ryan has about 400 CC's of free fluid floating around in his tummy so he has a giant 59 cm belly right now. They didn't want to put him under anesthesia with the pressure from the fluid so we are trying multiple doses of diuretics to try to flush the fluids out. This is all very normal after the strength of the chemo he received  He is also having some issues making his own platelets so it is looking like we will be inpatient for another week until his appetite improves and he doesn't need to get platelets everyday. We have been so fortunate to have such great medical staff to explain it all and make us a part of their decisions. We should know later today or tomorrow if he is 100% donor cells from a blood sample they had taken on Friday. Our Oncologist is very confident that he is all donor cells but wants to verify that he has shedded his KRAS mutation which can cause future problems. Well looks like I have a minute to nap so I will try to update again tomorrow!

Ryan is 100% donor cells!!!!!!!!! Now they just need to verify with the aspiration that he no longer has the KRAS mutation. Still a long road ahead of us but the good news is always welcome.

Day +30

Busy day. Ryan's counts keep coming up but we had to postpone his bone marrow aspiration today. The doctor that studies JMML is going to get a sample of it so they needed to push to Monday so she can get it fresh. While he is under anesthesia they will be doing an endoscopy to make sure he isn't experiencing graph vs host disease (GVHD). We are seeing his energy level soar but he is still reluctant to eat so he is getting his nutrition from his IV. With any luck his appetite will fire back up in the next few days. Have a great weekend!

Day +26

ANC this morning was 1,700!!! If he keeps this up it looks like we will be discharged next week. What a wild roller coaster. Keep up the prayers!

Day +25

Today Ryan's white blood cell count is 2.05 and his ANC is 1125! This is what we have been waiting for. He has returned to my full force terrorizer. I'm going to start him on PT and OT tomorrow to give myself a break, with any luck he will be walking by the end of the week. As a whole there are clear signs of him engrafting so by the end of the week they will do another bone marrow aspiration to find out what percent of his marrow is his donor's cells. He still hasn't taken his nap today so it's time to fight a losing battle. I will try to update soon with info about his counts.

Day +23

Day +14

What a week! Ryan has been recovering well, we are just waiting for his blood counts to start going up. Once his ANC is above 500 for three days and he doesn't need platelets for a few days they will consider him engraphted. We had a minor set back yesterday with one of the lines of his broviac became occluded so they had to replace it. The surgery was at 1pm, the surgeon said everything went smoothly now he's sleeping in my lap. It's been a week with lots of ups and downs but our little soldier is so strong. Now we wait. If you want to think of the donor's cells settling into Ryan's body and starting to do their job it would be greatly appreciated.

Day +7

So today was the day, the one we had been waiting to hit. He slept so well overnight and only needed a little extra does of Morphine to make it through then morning came. Once we woke up to get his morning weigh in and diaper change it was clear that the mucositis in his throat was acting up. Because of amount of pain that it causes when he swallows he no longer has any interest in other foods or even drinking bottles. Unfortunately it also causes his throat to create a mucus-y film that makes it difficult for him to eat even if he wanted to so he ended up spending his morning getting himself worked up until he would vomit up the sticky stuff. We have been dreading the day that this would all begin to happen, I think he handled it the best we could but it is so rough to see him suffer and not be able to do anything other than kiss / hold him to make him as comfortable as possibly. While we was having one of his purging moments he spit up his NG tube so they had to remove it and because of the progression of the sores they don't want to replace it, which I completely agree with. So this evening he was started on TPN which is nourishing him by IV until the mucositis clears up enough for him to resume eating and drinking. It will most likely be a pretty rough weekend but we are looking at the horizon knowing that the finish line is somewhere up ahead and if we keep pushing it we will get there eventually. I believe everyone should have gotten their shirts by now, I hope you like them all. I've been wearing mine around and the nurses all want some now so I'm going to see about doing another run since they are still very popular! Thank you again from the bottom of my heart for all of the kind words and Happy Mother's Day to all of the ladies. It's been one hell of a year and by the end of it we will have our little survivor back and getting on to the next chapter.

 

Our visit from Vinny Lecavalier

Day +5

Today was a good day, still just bracing ourselves for the storm that is about to hit. We got a visit from the music therapy volunteer who played the ukalele for Ryan, he seemed to really enjoy it. It is great when they have people like that come in, it makes the day seem shorter. Unfortunately he started losing his hair today just a few strands at a time. Everyone who ordered a shirt should be getting it this week. It looks like we will be doing another set of shirts since people seem interested.

Day +4

Time goes by much faster in here than you would expect. Day +2 was a rough day for Ryan, he started presenting with signs of mucositis in his throat. Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy treatment for cancer. The nurse explained that it feels similar to having a really sore throat but they decided to place a feeding tube during the early stages while he would still tolerate it well. Luckily he has still been drinking bottles by mouth and eating some table foods which is apparently very rare at this stage. The advantage to the feeding tube is that we can give his oral medications without upsetting him and he is still getting breast milk which (I think) has kept him a step ahead. They also started a small continuous dose of morphine to keep him comfortable and get through the next few weeks. Everyone that comes in to see him always seems shocked at how well he is doing, at this stage in the game we were expecting a much rougher time for him but he seems to be chugging along. Day +3 was Mother's Day and it was the best day I could have asked for. My in laws came to visit and see Ryan while my mother and I went to have lunch and get our nails done then Dan and I went to see Iron Man 3. Ryan had a great day and was so happy to have a day surrounded by grandparents. Today has been another great day, we even had a visitor! Vinny Lecavalier from the Tampa Bay Lightening has a foundation which sponsors the oncology department at the hospital and he occasionally visits the patients so Ryan got an autograph, shirt and a photograph with him. He even said  Honestly if he didn't have the tube you would have no idea looking at him that he finished treatment and he was as sick as he is. It's about time to see if he wants something to eat, thank you for reading and bless you for all of the thoughts!

Day +1

Ryan's transplant took place at around 9pm last night, everything went according to plan and lasted about an hour. In the next few days I will post the photos from yesterday. This is just a page turned in this chapter of our lives, we will be having a rough few weeks coming up before we will see the light at the end of the tunnel. Everyday the doctors / nurses / medical techs / nutritionists come in and comment on how great he is doing. He has still be eating much more than they were expecting him to and is so content to play in the exersaucer or to dance around the room in my arms. So far he has only had one difficult day which was brought on by the ATG and was expected to go down the way it did. According to everyone we have encountered we will be entering a couple of really tough weeks coming up which will be his body responding to the chemo. We will know when things are looking up once his blood counts begin to rise then they will do another bone marrow aspiration to see what percent of Ryan's marrow is the donor's cells. We have had a lot of people asking us for the information about the donor and all we have for information is that he is a 24 year old male from the US. With the National Marrow Donor Program we will have to wait one year (if the donor even wants to be known) before we can find out any more information. This is in place to protect both sides of the transaction, unfortunately some people are a little crazier than the rest of us and may use the information for less than positive reasons. I am just hoping that after the year that we will be able to meet this wonderful young man and our thoughts are with him while he recovers from his donation. It is amazing how selfless and generous it is to give your marrow to someone who you have never even met and save their life. In case one day you are reading this I cannot thank you enough for saving our sweet baby's life and giving him the chance to become the phenomenal person I know he is meant to be.  

Day -1

It seems like my last post was 12 hours ago but apparently it has been more than 2 days! Everything moves so fast yet so slow, it's like a black hole. As a whole Ryan has responded very well to his treatment, even better than anticipated. My mother arrived Monday afternoon as Ryan began getting his ATG. (ATG is not chemo but it wipes out cells as well to make room for the donor.) For some silly reason I had my guard down with this medicine and it's been the only one he had a reaction to, 80% of people who take the medicine have a responses so it is very much expected. Monday night my mom stayed with him so we could sleep but he was running a fever, had chills, vomiting, rapid heart rate but once morning came he did great all day and even did well with his second dose of the ATG Tuesday. He complete his chemo Tuesday early afternoon which is oddly a major weight off of my shoulders, don't get me wrong the next six months of recouperating his little body will be the hardest of my life but knowing that we are over this bridge reminds me that we are still moving forward no matter what the pace. It surprised me that he did very well with all of the chemo treatments themselves and has been feeding himself table food for lunch everyday. The nurses love him but honestly I don't know how you couldn't. He is full of what I like to call 'piss and vinegar' and has been keeping very active with little pockets of great cuddle time. I feel like I may be missing some things but he still has his hair, has a very light diaper rash, and if you came in the room not knowing what we were here for you wouldn't believe by sight that he was sick at all. We have been blessed that so many people care about us and I'm sure that things will continue to be amazing. 

Day - 5

As our day comes to a close we're starting to see the side effects of the chemo. Today had some ups and downs; Ryan is still slowly gaining weight but he needed a platelet infusion today because his red blood cell counts were low. His white blood cell count cut in half within 24 hours which is a good sign that the treatment is doing it's job, one of the hallmarks of the JMML is the body making an over abundance of white cells which actually drowns out the healthy cells from keeping the bad stuff out. (Think of it like a bouncer trying to make their way into a mosh pit to grab the guy causing problems.) Luckily we had a good 30 minutes of our happy little man playing around earlier. They have him on a diuretic so he doesn't retain too much water, which is a common side effect of his next set of chemo. His last dose of Busulfan will be 3am which will be followed by Cytoxan around 10am. Sorry I haven't been too good about updating, time seems to melt together when you spend your day in one room. I've been fortunate enough to have my wonderful husband here to allow me some nap time and alternate sleeping at the Ronald McDonald House. I'm pretty sure I've been getting our money's worth out of Hulu and Netflix, by the time we are out of here I will have seen every episode of every show that has eluded me over the last few years. As we are pushing through the next few days of chemo and you continue your prayers please keep in your thoughts the cancer cells leaving to make room for the healthy, fresh donor cells. Watching the things that I've seen the last few days it's hard to know how you truly feel but I have confidence in the hospital staff to put our Humpty Dumpty back together again. Bless you all and good night!   

Photo Update

Ryan seems to be taking the chemo well. We had a little issue with his Broviac line getting a hole in it tonight but the nurse was in the room and it was fixed as fast as it happened. I figured I would post some photos of our last few days so everyone can see our little monkey. Time to attempt to get some sleep!

Day -8

We're all moved in to our new room, the view isn't as wonderful as last time but there is much more space. All of the news  from the doctors so far has been good. Ryan will get his first dose of chemo at 9am tomorrow which will be given every six hours for three days. The first round is the most gentle of the three, which will hopefully ease us into the process. We have been taking pictures so I will post some later of our room and Ryan's handsome face. It has been brought to my attention at someone has donated cash without sharing their information, I believe that this person has been reading the blog so we just wanted to make sure that you know how thankful we are for your gift. The nurse is coming in, I will post an update in the morning.

Here we go again. (Day -9)

All packed up and on the road again. We will be staying in the Ronald McDonald House tonight then Ryan will be getting admitted in the morning to the transplant floor. Ryan has been getting a medicine since Sunday (Paliferman) to cause his mouth and throat to make extra cells to reduce the side effects of his chemo treatments. The treatment process will begin Wednesday morning and will continue until Tuesday then there will be one rest day then he will recieve his donor's cells. The process in the hospital is refered to in days, counting down will be t minus days then transplant day will be Day 0 and will begin from there. Thank you again for everyone's generosity, it is a kindness that we cannot be any more greatful for. The tshirts have been ordered and Ashley will be sending them out once she recieves them from the company, if you have not sent her payment just make sure she gets it soon so there is no delay in your delivery. Once people recieve their shirts I would like to make an online photo album with photos of people wearing the shirts and any pictures you may take of candles you have lighted in his support as a  show of how loved our little man is. Keep us in your prayers and I will try to keep everyone updated with our progress.

Baby steps

The last few weeks have felt like we were walking on a thin sheet of ice, taking baby steps so as not to break through. Within 24 hours of getting released from All Children's we were readmitted to the local children's hospital, Ryan had a fever which cleared up after some Tylenol and a stressful restless overnight. Luckily we were sent home within 24 hours and have since been doing very well. He seems to have gotten over all of the viruses, having a compromised immune system makes the smallest cold for anyone else a major event for us. The donor has agreed to reschedule his date of donation so our new transplant date will be Thursday, May 9th. With the updated schedule Ryan will begin taking Palifermin on the 28th to help ward off the mouth sores that are very common with the type of chemo he will be receiving. He will be taking this for the three days prior to starting his treatment and then again after because the effects can linger for a while. The treatment will destroy his bone marrow and assist the donor's cells to grow. (engraft) Once Ryan's blood is verified to be 100% of the donors marrow, that will mean that we are cancer free. There will be three different chemo drugs they will be used over a week: Busulfan, Cyclophosphamide, then Melphalan. Once we complete his treatment we will still be far from out of the minefield, there will be many more proverbial land mines to look out for. Graft versus host disease (GVHD) is a very common occurrence where the donor's cells see the new host as a foreign body and attack it. Luckily, there are many preventative medications that will serve as a social lubricant for the cells.   There will be a big group of medications that will be given to help prevent and lessen the side effects of the chemo and the lingering effects. The hardest part as a parent is the waiting, I like to think of myself as a very patient person but this kind of waiting is making me think I should sign up for sainthood. With a list of side effects and possible complications as long as my arm to watch out for I am still oddly upbeat. In our journey I have found some solace in reading blogs of other parents of children with JMML and I feel fortunate to have the ability to read their experiences to be better prepared for our next steps. I know it gets old hearing this but thank you to everyone who has been here for us during this transition and process, just knowing that we have such a great support system helps a lot. 

Good news and bad news.

After feeling like we had a handle on everything yesterday we have had a change in plans and are now admitted into the Oncology / Hematology floor until his transplant. Ryan finally slept for six hours straight for the first time in about six months last night only to wake up with a low grade fever. At around 4 a.m. the doctor on call had us go to the ER where they took more blood, administered antibiotics and admitted us to the room we will be in for the next 30 days. It is an advantage with not having to go back and forth from the McHouse to appointments in the clinic for the next few days but we were hoping to have one more hospital free day for our little man. The cool thing is that we are in a room with an amazing view of the bay so Ryan can look out the window at the boats. Very recently he has begun saying "bye" and waving so today when he  was watching planes fly by he was waving to them. Such a remarkable child, he is stronger than even he will ever know.

Parenting (noun)

There is nowhere in any dictionary, thesaurus, or wikipedia that can define what my idea of parenting is. According to any of these sources it's just a matter of rearing a child. There isn't a word mentioned in any of these locations that even comes close to the euphoria, confusion, sleeplessness, heartbreak, trainwreck that becomes your life the moment that your child comes into the world. Even with a healthy child each day has it's moments, let's be honest none of us are saints. Yet it amazes me how much you learn as a parent caring for a child with an illness.  You seem to take this burden onto your shoulders without even a moment of hesitation.  Previous to a conversation with someone close to me today I didn't even realize that what we are doing here and have been doing every single day isn't normal. It has just who we have become. Today my husband and I learned from the home healthcare nurse how to care for Ryan's broviac and how to administer IV medications. Instead of getting upset about the situation it was heartwarming to see my husband taking on this challenge and listening to every detail and even being the one to flush the line and even give him his medicine without any assistance. Each day will come with it's share of trials and tribulations but each one will also bring us closer together as a husband and wife and as a family. This parenting thing isn't too bad, hopefully he is still this loveable as a teen!  

T shirt time!!!

Early this morning Ryan had his broviac (a central line) put in and they took another bone marrow aspiration. Everything went very well and he is recovering very smoothly or should I say wobbly on some fantastic morphine so we are all hoping for a peaceful night of sleep. I will attempt to continue with the updates daily, thank you everyone for your continued support. One  of my dearest friends has been gracious enough to offer her time to set up the sale of shirts to help raise funds for Ryan's medical trust account, the link is posted. 

Ryan's Army Tees

Ready or not here we come!

I'm writing this in the car packed to the gills with what will be our lives for the next six months. We have our first appointment today and first thing in the morning our little champ will be getting his broviac line placed. Not being a very religious person I will still ask for all of your prayers and lighting of all of the candles you can manage to give. Thank you to everyone for your support, the fact that we even know you are here for us is amazing.

Good things come this way.

We will be making our trek to St. Petersburg next week to begin the treatment process, it is such a relief to be able to write that. He will be getting his line placed as an outpatient a few days before so they can run some tests and give him some medicine prior to treatment. His 'conditioning' will take eight days then his transplant will be on April 18th. Once we get up to the hospital and admitted I will keep everyone updated on how things are going. The next week were are spending at home chemo free with lots of love and food. I am hoping a few extra pounds will help out once his lack of appetite kicks in. I know some people have fundraising efforts in the works and I can't put into words how grateful we are for the generosity of others. To anyone who has been asking how you can help, I finally have a solution for you! Today we got a trust account set up for Ryan's supplemental needs for medical bills not covered by insurance, help with car payments, and things that will cheer him up in the process. You can also make donations in our name to the Ronald McDonald House to help with the cost of our stay during his treatments, there is an area on the RMH website to make a donation or you can send a check to the address below and just write a note with the payment letting them know the payment is for our stay. Thank you so much again everyone! I have set up a PayPal Account for donations which is linked to an account at Chase Bank that is able to be found by my name if anyone wants to make a donation at the bank. Once I have solid information about when and where the fundraisers will be I will post to make sure everyone is in the loop. Like I said before keep up the prayers, positive thoughts, and candle lighting! Lots of love and hopeful hugs! 

Ronald McDonald House of Tampa Bay

35 Columbia Dr

Tampa, Florida 33606

Progress.

The transplant doctor has decided to proceed with the 8 for 8 match that is CMV negative. They have proposed some dates to the donor. Once the donor picks the date that they are able to donate we will know when we are getting admitted. We have two days of pre admittance testing to do at the hospital next week. As soon as we know more we will continue to keep you posted.

The waiting game

Our visit at All Children's went well but we left a little disappointed. The 10 for 10 matched donor is CMV positive and Ryan isn't so they don't want to expose him to it. (CMV is a virus that once you've been exposed, which most of us have, it stays in your blood forever.) There is an 8 for 8 match with a DQ mismatch that is CMV negative which is looking like our better choice now. They activated two more donors to see if either of them could be a perfect match. There were also a few cord blood matches but they try not to use cord blood in case he relapses they like to use the same donor again. Since Ryan is responding well to the oral chemo and his other symptoms are in check for now they aren't in a 'rush'.  My biggest concern is that JMML can take a turn for the worst with no warning. It has taken me the last two days to even write this post, just not wanting to believe it myself. It is looking like another 4 to 6 weeks until we get admitted. We also met with the surgeon, she will be putting in a central line for Ryan to get meds and blood drawn through. Luckily he will be allowed to wear all of his normal clothes as long as there is still access to his line, which was a reliefe. He just woke up from his nap so that's my cue. Keep us in your thoughts and in the next week or so I should have more info about the fundraising efforts. Have a great week!

::Happy Dance::

The last few days have brought some great news! They have officially found a 10 for 10 match for Ryan's bone marrow. We have an appointment next Thursday at All Children's to meet the rest of their team and find out when we will be getting admitted. Overall he is still reponding well to the chemo at home although his spleen and liver are still enlarged. We have been making weekly visits to the oncologist because he is basically Ryan's primary care physician until transplant, today they were happy with his blood counts. The nurses even gave Ryan a gift with a knitted beanie, a blanket and some books! So keep up the prayers, they are working. As soon as we know the date he will get admitted we will fill everyone in. Thanks everyone!!! 

Positive thoughts in action!

If everyone could go to this Facebook page and like it, 

this is the attorney that has graciously offered to create our Special Needs Trust pro bono. The universe is finally giving us a break! 

Eric J. Olson, Esq., Attorney at Law

Another week in the books

It's about that time to update our blog again. Not too much has been happening lately, from what I heard the waiting can make even the most sane people go stir crazy. The oral chemo was making his platelet count drop into a level that was not to their liking so we took a break for a week which allowed them to come up closer to where they should be. Unfortunately during that week his white blood cell count almost doubled so they lowered the frequency of the dose and we'll see how he reacts. For everyone who has been asking about fundraising efforts I am in the process of setting up a supplementary medical trust for all of the donations. This will be an account anyone can put money into and legally can only be used for things that will enhance the quality of Ryan's life. We also have some fantastic family/friends that are working on some great ideas as well; we will have t shirts for sale as well as para-cord 'survivor' bracelets, bake sales, a cord wood raffle, a photo shoot raffle, and many more ideas. Once again I will keep everyone updated. I am hoping that by this time next week we will have everything set up and we can start the fundraising bonanza. Thank you again for your continued support! Ryan's Army on Facebook

Be The Match Walk / Run

I'm kicking off my fundraising efforts for the Be The Match Walk+Run. 100% of the 

event proceeds will add new marrow donors to the registry, help patients with 

uninsured costs and fund research. Please support my efforts!

 Ryan's Army Team Site

St. Pete

Today we went to All Children's Hospital in St. Petersburg to meet with the team that will be doing Ryan's bone marrow transplant. The preliminary bone marrow match search came up with some candidates; five adult donors with three that are 10 for 10 matches and there were some cord blood matches that they are looking into as well. They have 'activated' the donors that are the best matches for him and will be double checking the H.L.A. (human leukocyte antigen) typing to be sure that we have a perfect match. Once we have a match they will call us to come in and start his conditioning treatment. Another great piece of news is that all of their treatment methods are exactly what we wanted. He will not need a splenectomy or have to undergo radiation instead he will be given a pretty intense combination of chemo drugs in the hospital for about a week before his transplant.  Once they have his immune system broken down the transplant itself is just a bag of stem cells from the donor's bone marrow, it looks like a bag of blood, which takes about an hour to infuse and should not be painful or difficult at all. They will most likely need to get blood transfusions as we progress to keep all of his blood counts where they need to be. Then we will wait to see if it takes, they hope to see signs of his red blood cell counts going up within 30 days. Once he shows improvement with signs of engraftment we will be able to stay at the Ronald McDonald House or another place close by for frequent clinic visits for about 100 days. The transplant coordinator gave us a tour of the hospital today including the floor Ryan will be on. The nurses loved him, so I took full advantage of it and asked if we can get one of the bigger rooms with  a view of the bay which seems like it will work out! This unit is the hematology / oncology floor where the kids that are getting chemotherapy treatments are, when we arrived on the floor we walked in as a little boy was getting released to go to the McHouse. It was amazing to see how excited he was and how happy his family was, soon that will be us!!! One step at a time this is becoming more and more manageable. Keep sharing our story and spreading the word, every single prayer counts. 

Milestones

You never really see how strong something is until you put it to the test. As a parent you are constantly worried about your child's well being but when your child is sick that worry becomes somewhat of an obsession, I have to admit that becoming 'nurse mom' has been the only way for me to handle this without being a blubbering mess. My husband and I aren't very religious people and with what is happening in our little boy's body it makes it harder to believe some days that an all powerful being could allow innocent sweet babies to get sick. Then again you have a greater appreciation the days when you see the sunbeams breaking threw the clouds. On January 1st in his ICU hospital bed we discovered that Ryan's first tooth broke threw then he very shortly after stood on his own for the first time. Before we were discharged from the hospital our fragile and meek infant had overcome a terrible infection, had more blood drawn from him than I had seen before in my life, gained weight all while teething with the worst diaper rash I have ever seen. Against all odds every single day without fail he was laughing, playing, cuddling and even flirting with the nurses. Everything was put into perspective for me. Now that we've been home I can see now more than ever how lucky we are to have the support system we have. I just want to thank all of you, every single prayer and positive energy you are sending us is much appreciated. At his oncology appointment his white blood cell count went down again to 44,000! With any luck they will contine to go down. We have an appointment tomorrow at All Children's Hospital in St. Petersburg which is where Ryan will be having his conditioning and bone marrow transplant, once we get the information about his treatment I will update everyone. Thank you so much for reading and being a part of this process with us. (Ryan's second tooth broke threw a few days ago, I added the picture for you to see)

Hurry up and wait

Our appointment yesterday at the Oncologist went well. I was really hoping he would tell us they found a match and they were just waiting for us to get there, all things in good time I suppose. Taking the oral chemo at home has been doing it's job keeping his white blood cell count down, it was down to 47k yesterday which is half of what it was when we were at the ER. I spoke with the bone marrow transplant coordinator at All Children's just to be sure we have alll of our bases covered. As soon as our insurance sends them authorization we will have an appointment to meet with our tansplant doctor and start building on our treatment plan. Once I get a better idea of what our medical costs will be I am going to be setting up some fundraising to help with medical bills, so stay tuned for that. We have sent off for our bone marrow donor kits which I put up in an earlier post, if you are under 44 it is free to get the kit sent but they prefer donations. Since we know that finding a donor is important to so many families were are making a team for a walk/run if anyone wants to join us on March 9th in Tampa you can join our team but we are also looking for donors for the walk as well if you want to check out the link below. I hope everyone is having a great holiday weekend and if anyone has any questions about anything feel free to email me and I'll try to post some answers up here for you.

Be The Match Walk / Run Fundraiser

Mmm, avacado.

Since everyone is trying to help us one way or another and many people have asked how they could become a bone marrow donor. The following link will take you to a web site that will ship you a testing kit.

http://marrow.org/Join/Join_Now/Join_Now.aspx

New ThanksMas

Today we decided that because our holiday season was so crazy and we didn't have a traditional American holiday dinner together that we should do it while we were all home today. I cooked a turkey, stuffing, all the fixings then we all sat at the table with the fancy plates and said grace. It was nice to have a relaxing day together and just enjoy each other's company. The last few weeks has had many ups and downs, we are taking this all one day and one event at a time. The downs this week have been much easier to take on, Ryan has begun taking a low dose oral chemo (mercaptopurine) at home and so far only seems to be a little more tired than usual. The first few days giving him the medicine was incredibly difficult for me knowing what I was feeding him but I had to keep reminding myself that this is what he needs. We had our first office visit with his oncologist on Thursday and it went very well but there was an anxious feeling inside of me that was worrying that they would readmit him to the hospital. (it seems silly thinking about it now but nothing has been rational in my mind so far) His blood counts were all exactly where they wanted them to be. Things were all up from there. Ryan even got a new toy, a Mickey ring stack, which he has become very smitten with. At the office the nurses were all impressed with Ryan's activity levels, even Dr. H. was joking saying they will think he's crazy giving treatment to such a healthy baby. Since he has been doing so well our next appointment will not be until Friday the 17th, by then we will have the results of his cytogenetics and a treatment plan. For now it's looking like his treatment will take place at All Children's in St. Petersburg  which is about the same distance from the house as it is to Florida Hospital so we will be able to be close to family and a great support system. A lot of people have been asking about bone marrow donor information to see if they can help, I'm in the process of figuring that all out myself. They have been looking in the registry for a match already, hopefully they will tell us more about that at our next office visit. I have been using all of my free time looking at information / support groups / blogs for survivors and families of JMML patients, it's amazing how much you can learn so quickly! Keep up the prayers, the power of positive thinking is greatly underestimated. 

Facebook Official

After keeping the information of our pending diagnosis within our family and spending our New Year’s Eve at the nurses station in pajamas with complete strangers we decided that we needed to share this news with all of our friends and family… what better way than to put it on Facebook.  

[Facebook post] January 1st, 2013. – For anyone who has been waiting to hear from us we just want everyone to know that two days ago Ryan was admitted into the Pediatric ICU at Florida Hospital For Children. Based on the current information it’s a 99% chance that he has a very rare form of leukemia. We are keeping in good spirits and he is doing VERY well right now, he has the best doctors on his case and they are doing every possible thing they can to make this process better. Once we get more information we will share with everyone but in the interim please keep us in your thoughts and prayers. If you could refrain from phone calls, we’re dealing with this one day at a time. Feel free to send Facebook messages and I’ll get back to everyone when I get the chance. Thank you

The outpouring of positive thoughts and prayers was so much more appreciated than we could possibly ever put into words. I’m not sure if it was more the medicine or the prayers but his infection cleared up and his blood counts kept getting better everyday. January 3rd, we finally caved and got a room at the Ronald McDonald house which was amazing just to shower and lay down in a bed without having to think about anything for a few hours. Ryan started sleeping through the night and things kept getting better. 

[Facebook post] January 4th, 2013- Today we got moved off of the Pediatric ICU, YAY!!! The doctor has confirmed that Ryan does indeed have the rare juvenile myelomonocytic leukemia but there are still tests that are being processed so we need to wait two more weeks until we can start talking about treatment. Luckily Ryan is doing VERY well. If he keeps his stats where they are all weekend the doctor is going to try to let him come home until the rest of the results come in. So we’re in good spirits and can’t wait to kick this cancer’s butt!

This was the day that the JMML was confirmed and Dr. Hajjar told us that Ryan also has a gene abnormality (monosomy 7)  which is another branch within the leukemia. So not only does our sweet little baby have the rarest 1% off all childhood leukemia, his abnormality only affects 11% of these children. We have also been lucky enough to have one of the best pediatric oncologists  who is also on the board of governors for St. Jude’s so he personally knows the doctors there as well. Things just kept looking up; our doctor was in contact with the world leading reseacher and oncologist who specialists in JMML (Dr. Loh at UCSF) and we have an extended family member who is a pediatric oncology nurse who actually works with her at UCSF. So she has received his bone marrow and blood to start testing the cytogenetics to get all of the pieces to the puzzle before we start treatment. Those results should get back Thursday January 17th. 

[Facebook post] January 8th, 2013 – Due to all of the positive thoughts and prayers we will be going home today! We will be having clinic visits until his blood work comes back from U.C.S.F. around the 17th. He just has to stay healthy until we start treatment so we can stay at home until treatment. Keep praying, we are seeing the results every single day.

Being home has been the best thing for not only Ryan but for us as well. To hear him laugh and play in our own living room is worth more than anything money could buy. Now that things have slowed down some we’ve been able to enjoy the little things. Sorry if any of this has been redundant or doesn’t make much sense, I’m still a little foggy. 

We began a very low dose oral chemo at home which has been the most difficult thing in the last few days, mostly the fact that we have to whittle his cells down to nothing to be able to let them grow healthy again. We will have our first visit to Dr. Hajjar’s office where they will be monitoring his white blood cell counts and other blood function twice a week. So far it looks like we’ll be doing his bone marrow transplant in St. Petersberg at All Children’s but we have no idea when but they have started looking in the transplant database for a match. But he just woke up so I’ll fill everyone in again once we get some more information.

Photobooth

Numb

In the ambulance on the way to the Children’s Hospital the lady EMT spent the whole ride trying to keep me occupied with idol chit chat, I think she could see by the look in my face that nothing was clicking for me and she just wanted to distract me while she had the ability to. As she was telling me about her failed dating history I spent the majority of the time watching Ryan sleep in his car seat strapped to the gurney with my mind spinning wondering what our lives would be like the moment the doors opened, just knowing that nothing would never be the same. Dan met up with in the ambulance bay as we were heading into the back entrance to the hospital. It felt like every single thing was whirling by us and we were barely moving. Getting off the elevator on the 6th floor we rolled down the hall and came to double doors “Pediatric Oncology / Hematology” was printed on the wall. In the previous post my husband mentioned how you find yourself repeating in your head how there is no way your infant could have cancer, what kind of cruel world would that be. Leads were attached, an IV was started, tests were being taken and Ryan wanted nothing to do with it. There is a moment that I can describe as nothing short of panic, you want to grab your baby and run, run as far away as you can. The nurses assured us that everything was fine but it felt like my soul was tearing. Once the sun started to peak into the window in our room and Ryan feel asleep from pure exhaustion the nurses convinced us to try and get some sleep on the pull out couch in his room. It wasn't more than hour later that the nurses traded shifts and we were awakened again for the day. Time in a hospital is just to hurry up and wait. The oncologist came in and started right away feeling his belly and checking his reactions. The nurse took Ryan out of the room for a walk as the doctor started speaking with us, there was a look of concern on his face that I couldn't quite get past. He went on to say that Ryan was presenting with all of the signs of Leukemia and that with his current white blood cell count they wanted to move him to the ICU. Not even 12 hours before our baby was fine, he had a cold… how did we go from having a cold to being admitted to an ICU?!? At this point we decided that we needed to call our parents, we were not going to be able to do this ourselves. By the time the nurses from the ICU made it to our floor to move Ryan, Natalie (Dan’s sister) had made it to the hospital and both of our parents were on their way. They transported him and as soon as we arrive on the floor they once again began hooking up leads and I had to start explaining everything from the first cold symptom to a new doctor and staff. A whirlwind of doctors / nurses, IV drugs, tears, hugs and confusion kept me fueled until we finally crashed for the night. At some point our parents had arrived and began to ask the doctors all of the questions that we couldn't manage to get past our own lips. Each day passed day to night and we would not have known otherwise. 

The Good, The Bad, The Terrifying

This is our son Ryan Douglas. He’s 6 1/2 months right now and about a week ago my wife and I where more scared, angry, and lost than we will hopefully ever be again. It was December 29, 2012 at 4:30 am. I may have worked a 12 hour day the night before and only gotten 4 hours of sleep, but I will remember this moment for the rest of my life. My wife (Jess) came in to our room holding our inconsolable son in her arms. “Dan, I need your help.” I would never in a million years would have guessed those five words would usher in the end of life as we knew it. After a slow and semi comatose husbands gets up grumbling under his breath, he walks out in to the living room to find his wife and child sitting on the couch. I asked Jess what was up and with the tired eyes of a first time parent, she looks up and says “Ryan has been crying uncontrollably for an hour. He has a fever of 102.1 and his eye is incredibly puffy.” My wife called our insurance provider to see what urgent care we where authorized to visit. After finding an available urgent care, we decide to give him a dose of baby Tylenol and wait to see how he does. At noon we decided to go to the urgent care office just to be safe since his fever was unaffected by the Tylenol. After a 30 minute drive and a 3 hour wait, we where finally allowed to see the physician. We told him about Ryan’s fever, his swollen eye, and his stool. He said he was no expert on children but prescribed Ryan an antibiotic and told us to see his pediatrician on Monday. Pleased with the diagnosis we returned to the house and gave Ryan a dose of the antibiotics, some more Tylenol, and booby milk. His fever didn't seem to be affected by the Tylenol. Finally his fever spiked at 103.3 so we immediately went to the Emergency Room around 6:40 PM. Once we arrived and waited for the triage nurse. 2 hrs later and she was going to just send us home having the ‘non emergent’ doctor prescribe us more antibiotics. Luckily for us, the moment he saw Ryan he seemed immediately concerned by the information that we gave him about his status and the treatment we had received thus far and called for him to get an x ray and blood work. If it were not for that doctor we would not have known what was brewing under the surface. After watching the E.R. staff try and fail to get a good I.V. line, blood was drawn and we where all finally able to eat and sleep. 12:20 AM, those numbers, will be burned into my mind for the rest of my life. Ryan was fast asleep, Iron Chef America was on, and Jess and I where trying to sleep. (unsuccessfully) We both knew that something wasn't feeling right, everything about the moment was wrong. The doctor comes in to our room. He pulls the curtain aside and I try to look in to this man’s eyes. But with every attempt he looks away. I've seen this before, the aversion to eye contact, the fidgeting hands… bad news. Expecting the worst, I remember thinking it was a good thing Jess and I where both sitting. And then, the words come out like daggers and gun fire. “Your son has leukemia.” There it was, no wind up. No “I have some bad news…”. Just THAT word. It sounded hollow at the time. A word with immense weight but no meaning. I felt numb, everything stopped working. Had I been standing… I woke up and there was a man in a white doctor’s coat talking to me. Had he been there long? I felt my head shaking up and down. As if because there was no meaning to the words, my mind defaulted to the only appropriate thing. A scream to my left. Ryan’s awake and the man leaves. I pick him up, still not hearing anything except THAT word. Rocking, I’m rocking back and forth now, mumbling something. Still no meaning but I hear the words coming out. “You’re not allowed to have cancer. You’re not allowed to have cancer.” As if by sheer will alone he’d be okay. We pass him back and forth, both of us crying tears of pure sorrow. I pray we never see those tears again because it would probably be the last time. Finally the doctor comes back in and tells us that we’re going to be taken to the Florida Hospital for Children and that an ambulance will be there to pick us up shortly. I deftly drove home to pick up some essentials still thinking that the doctor was wrong or lying to us. (As if Ashton Kutcher would jump out of the bushes screaming “You just got punk'd ”) I get back to the E.R. just as the EMT’s where about to leave with my baby boy and wife. They tell me to follow them in my car to the hospital and I nod in muddled understanding. The rest of the night is still a delusional blur. A dream shrouded in a fog thick enough to cut with a knife. The drive to the hospital was one of the longest drives of my life. At one point, I thought the back of the ambulance was a robot that was waiving at me. At another, a plane revving up to take off. I finally “wake up” from my dream in the parking lot of the Orlando Science Museum at 3:30 am. After that, everything is a blank. Between the shocking news we had received not 2 hours ago and the 4 hours of sleep I had received the night before, the fog came down and didn't lift for almost 2 days. So I’ll let Jess take the story from here.

Our Little Family