Good afternoon! As we are less than 2 weeks out from the start of Paige’s bone marrow transplant journey, I wanted to take a moment to share with you some updates and share some thoughts as Paige’s mom.<\/p>\n
On Sunday, Mike and I traveled with Paige and Hannah to Philly because we had a day worth of appointments on Monday. Hospital days are typically long and tiring and Monday was not an exception. It was actually the longest of our hospital visits; our first appointment was at 9:00 am and we finished the 8th one at 5:30 pm, then began our 2.5-hour journey home.<\/p>\n
Our first appointment for Paige was in rheumatology. We had noticed last Thursday that her ankle and toe were starting to swell again. Some of you may remember that her swollen little toe over a year ago is what led us to such an early diagnosis of LRBA. One of the issues LRBA has caused for Paige is Juvenile Rheumatoid arthritis. At one point she limped quite badly when walking, and the pain only grew with each passing day. The pain grew so bad that often she would need to be carried. We were fortunate to have the rheumatologist at CHOP treat the arthritis last summer with an ultrasound guided steroid injection into both areas. It very quickly gave her relief and brought her swelling down substantially. The hope was that her biweekly infusions of Abatacept (the medication that is her makeshift ‘off button’ for her immune system) would take over and keep things at bay. Thankfully, they have until this past week. This flare up may not seem significant, but when you as a parent are constantly questioning if your decision of taking your ‘healthy’ child to transplant is the right choice, a setback like this only helps to solidify our decision. Seeing that Paige is already having ‘break throughs’ while on Abatacept has reassured us that this is exactly the choice we must make for her. These little moments continue to bring us some peace about our decision to put our sweet Paige through the misery and risk she is about to go through-all in hopes of giving her a chance at a long and healthy life.<\/p>\n
After the rheumatoid arthritis appointment, we went to Phlebotomy where Paige and Hannah had labs drawn. 15 vials for Paige and 13 for Hannah to be exact!<\/p>\n
From there, we had Hannah’s donor work-up meeting to discuss more about the process of retrieving Hannah’s bone marrow. Mike will bring Hannah to the hospital early morning on April 20th. She will be put under anesthesia and her bone marrow retrieved in two spots on the back of each hip with a needle. The team continues to reassure us that Hannah most likely will be up and playing later that day and for sure by the next. I was relieved to learn that I will be able to see Hannah before and after her retrieval, even though I will be isolating in the hospital with Paige. That took a huge weight off my shoulders. Through all of this, we will continue to have confidence in these experts who we are entrusting with two of the three most precious gifts in our lives.<\/p>\n
After the donor evaluation, Paige had an echocardiogram and EKG. Once those tests were completed, we had to head back to rheumatology to have 2 steroid injections placed into her joints. The reason we could not do that during her morning appointment was because her rheumatologist had to confirm with the bone marrow team that steroid injections this close to transplant would not negatively impact any part of the transplant process. Her BMT doctor informed him that for her best chance of success with the BMT, Paige “needs to be as healthy as possible” and if she needed the treatments, they needed to be done that day. As usual Paige was so brave when he injected both needles into her ankle and toe.<\/p>\n
Our last appointment was a 1.5 hour long cognitive test. This appointment is because Paige is enrolled in at least 4 clinical studies through CHOP, and this test was for one of them. Sitting in the oncology waiting room is often hard.<\/p>\n
Sitting in an oncology wing specifically for children is nothing short of heartbreaking. While Paige’s life-threatening disease is not necessarily outwardly evident, many of these other children’s diseases are. As we were sitting there, Mike and I both noticed a little boy about Paige’s age playing by us who had a very prominent 4” long bump protruding an inch or so from behind his ear. Mike noticed his mom was wearing a shirt that was clearly a social media page for her son. After a quick search we found Ryland’s page. This poor child has a type of rare cancer that has only given him months to live. His family has been flying to CA every few weeks for a clinical trial in hopes to extend his life. Our hearts break for this family, who we have never met, and we only know some of what they must be feeling. It really put Paige’s situation into perspective for us. While her disease is no less severe, we feel so blessed to have been given a diagnosis early; early enough that her LRBA hasn’t completely taken over her body to the point that a bone marrow transplant would no longer be an option. We are thankful that we have a potential treatment and cure. God is the only one who knows the outcome of Paige’s transplant; we at least have this hope and know that He is in control. Reading this child’s story has put things more into prospective for us, but thinking of all the possible outcomes of transplant still can’t seem to escape me. I spend most nights fighting my brain to keep it from starting down the typical “glass half empty” road that my brain seems to be wired for. And even in those moments, while I think it all over, wonder and worry, I find comfort knowing that God is sitting there with me. He tells me again and again, “I’ve got this. I will continue to carry you and Paige through this. It’s going to be okay.” Many days He just needs to talk a little bit louder for me to hear Him!!!<\/p>\n
In 13 days, Paige will be admitted to the hospital to start her chemotherapy conditioning before transplant. We would like to ask for continued prayers for Paige; that she survives her lifesaving transplant and that it is successful. We truly appreciate each time you petition God on our behalf through prayer. The power of prayer brings so much comfort to us. Thank you so much for this past year of support. We have felt your prayers and thoughtfulness, whether we personally know you or not.<\/p>\n
-Lisa<\/p>\n
“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” -Isaiah 41:10<\/p>\n","protected":false},"excerpt":{"rendered":"
Good afternoon! As we are less than 2 weeks out from the start of Paige’s bone marrow transplant journey, I wanted to take a moment to share with you some updates and share some thoughts as Paige’s mom. On Sunday, Mike and I traveled with Paige and Hannah to Philly because we had a day […]<\/p>\n","protected":false},"author":0,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-6","post","type-post","status-publish","format-standard","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/cota.org\/cotaforprayforpaige\/wp-json\/wp\/v2\/posts\/6","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cota.org\/cotaforprayforpaige\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/cota.org\/cotaforprayforpaige\/wp-json\/wp\/v2\/types\/post"}],"replies":[{"embeddable":true,"href":"https:\/\/cota.org\/cotaforprayforpaige\/wp-json\/wp\/v2\/comments?post=6"}],"version-history":[{"count":0,"href":"https:\/\/cota.org\/cotaforprayforpaige\/wp-json\/wp\/v2\/posts\/6\/revisions"}],"wp:attachment":[{"href":"https:\/\/cota.org\/cotaforprayforpaige\/wp-json\/wp\/v2\/media?parent=6"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}