Connolly's Diagnosed Journey

This is the journey of a 3 yr old boy named Connolly...Who underwent a Bone Marrow Transplant in attempt to cure 2 rare blood cancers/disorders. Welcome!

On November 6, 2014 I noticed multiple bruises on Connolly's legs. But with having 3 little boys four and under in the home that are rather rough, tough and ornery I wasn't really too concerned about them. I mean bumps and bruises are a daily occurrence. Over the next few days the bruising began to multiply...It was on his face, his arms, his back, his legs and multiple other places. I had also no

ticed that he had some red dots (petechiae) throughout. I decided to take Connolly in to see his pediatrician on Monday November 10th, 2014. They took a blood draw to run a CBC. The results came back with his platelet count being 9 (9000). I was told the lowest his platelet count should be is 210 (210,000). With a platelet count that low he was at risk for nonstop bleeding under the skin, internally and/or through an injury on the skin. He was life transported via ambulance to Children's Hospital. Admitted to the hospital our lives became a blur. Doctors, nurses and more coming one after another or in groups. It was believed he had I.T.P. (Idiopathic thrombocytopenic purpura). Which is a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting. Persons with the disease have too few platelets in the blood. The treatment plan was to give him an IVIG infusion. Which is intravenous immunoglobulin (IVIG), also known as gamma globulin. This treatment runs hours and caused Connolly some nasty side effects. It takes 24 hours to begin to see any changes in the patients’ counts. During the labs on November 12, 2014...We found that not only had his platelet count not gone up, but dropped even further (to 6). He was also becoming anemic and his white count was going down...He tested positive for RSV and Rotavirus. Discussion of performing a bone marrow biopsy were in the works, but the Hematology Oncologist wanted us to try another IVIG infusion, in hopes that it would fix the issue. Unfortunately, it did not and Connolly had to undergo blood and platelet transfusions. This was done due to how severely low his counts were and to perform the bone marrow biopsy which took place on November 13th, 2014. Steroids were started that same day in hope to slow down his platelet destruction and give his body a chance to recoup. On Friday November 14th, 2014 we were given the news that he tested negative for Leukemia. Steroids were stopped on Sunday after finding there was no change in his blood work. On Monday November 17th, 2014 we were given the news that he has Aplastic Anemia. Aplastic Anemia is a disease of the bone marrow (essentially hollow bone marrow). It happens when the bone marrow stops making enough red blood cells, white blood cells and platelets for the body. Any blood cells the marrow does make are normal, but there are not enough of them. Connolly has a very severe form of Aplastic Anemia. Which puts him at risk for life-threatening infections or bleeding. After being given this diagnosis we were also told that we were still awaiting a third test from the bone marrow biopsy and it could take up to two weeks. We also discussed having a central line placed for his future transfusions. On Wednesday November 19th, 2014 Connolly underwent his second platelet transfusion and surgery to place his central line. In recovery Connolly had a bad reaction to anesthesia as he was waking. He threw himself about and ripped part of his new line and had to be taken back to surgery to fix the issue. His downward spiral with anesthesia continued through the night. Let's just say it's was a very long night. On Thursday November 20th, 2014 Connolly needed a second blood transfusion. Later that evening one of the Hematology Oncologist paid us a visit. She was there with the final bone marrow biopsy results. Connolly was found to have MDS (Myelodysplastic Syndrome). Myelodysplastic syndrome (MDS) is a rare disease of the blood, only occurring in four out of every 1 million children. Usually it develops in older patients (60+), it can occur at any age. It develops in the bone marrow, which produces the three major blood cells. This disease occurs when the bone marrow does not properly produce sufficient numbers of healthy red blood cells, white blood cells and platelets. These blood cells lose their ability to mature and function properly…

(CONTINUED)
…The only treatment for Pediatric MDS is a Bone Marrow transplant. Connolly’s 4.5 year old brother, Broderick, would be his best chance at a successful transplant. Until a donor is found he would continue to get blood and blood product as needed to support his needs. He would need to be seen every Monday and Friday in clinic to have blood draws, be given any transfusions that may be needed and to monitor his health and central line. We would have to have a home health nurse on call for any of his central line needs. We were told that Connolly no longer has any type of immune system and it would essential for us to keep him as sheltered as we could. No large groups, no eating out, no shopping, no house guests, no anything…just home, doctors and hospital. At home things needed to be hospital sanitized…hand sanitizer pumps everywhere, antibacterial soap, paper towels and hospital masks to become a new normal. Connolly’s 16 year old sister, Gwendolyn, was/is required to wear a hospital mask at school all day and sanitize constantly. Anyone from our household would need to wear a mask in public settings to avoid catching a bug and bringing it home to Connolly. He would be required to wear a helmet when moving about, playing or out of the home to protect his head. If he sustained an injury to his head, even a slight bonk, it could result in a massive internal bleed and he could die. We were given a new normal for Connolly…It consisted of low blood counts, blood and platelet transfusions and severe risk for internal and external bleeding. He could go home after he stabilized more and most of his care would continue through clinic at Children’s Hematology Oncology and with UNMC Pediatric Hematology Oncology/Bone Marrow Transplant team. After he went home we would have strict guidelines to watch for. We were instructed that Connolly was to return to Children's emergency if he had a temperature of 100.4, loss of appetite, inability to tolerate prescribed medications, specific symptoms such as increased bruising and/or bleeding, low energy or weakness…and to call with any question or concern. I felt faint. We had just been given the worst case diagnosis. I was in complete shock and hadn’t a clue how to begin to comprehend. I immediately became overwhelmed and lost. We were told that we would be given a ton of information in the upcoming days in the hospital and in clinic after Connolly went home. That there were other factors that hadn’t been factored in regarding his illness. That we would have to have some genetic testing completed, blood typing of immediate family and a few other things put into place to have a complete diagnosis. That there still were a few factors that could make this even more severe and unfortunately we had to wait on insurance to approve the testing and then the lengthy time it took to get the results. Connolly remained in the hospital until Sunday November 23rd, 2014. He came home on medication for his nausea, an antifungal for his central line, a medication to prevent PCP and Pneumonia and his normal heartburn medication. On Monday November 24th, 2014 Connolly has his first clinic appointment. During this appointment his 5 day old central line quite working and had gone bad. They had to remove it that day. They set up a new surgery to place another central line for the following Monday December 1st, 2014. Unfortunately Connolly needed to be rushed dot the emergency room on Friday November 28th, 2014 due to him screaming owie and pointing to his tummy for over an hour. He was admitted back into Children’s due to having spells of Intussusception and swollen lymph nodes. He required a third platelet transfusion on Saturday November 29th, 2014. While in the hospital Connolly began to have eating, drinking and potty issues and to be safe they kept him for further monitoring. His central line was placed on Monday December 1st, 2014 right in the middle of his chest. Different anesthesia was used to try to avoid the violent outbursts he had been having in the previous surgeries. After surgery he had troubles waking, but once awake he did fine for about 1.5-2 hours. During this fine and awake time frame Wesley (dad), Broderick (brother) and Penny (Mom, myself) went to the hospital (UNMC) that would be handling his transplant to have our blood drawn to begin blood typing to see if any of were a part match or full match for bone marrow. These results would take at least a week. We then rushed back across the city to Children’s where Connolly was. It turned out just in time as he then began falling asleep mid activity and then waking 10-30 seconds later to pick up right where he left off. He then fell asleep and began having spells where he just stopped breathing and I would gently to shake him to get his breathing again. They put leads on him to monitor his vitals and also his blood oxygen levels. This continued through the night and he was given a special steroid to bring down swelling from the breathing tube used during surgery…in hopes that that was the issue. The spells began to lessen and he was allowed to go home on Wednesday December 3rd, 2014. Our next step was to go to clinic on Friday. Here is a website that has some decent information on the MDS for the pediatric side. http://www.danafarberbostonchildrens.org/Conditions/Blood-Disorders/Myelodysplastic-Syndrome.aspx?_vsignck&_vsrefdom=myelodysplasticsyndrome&gclid=Cj0KEQiA5K-kBRDZ9r71gOvlxOMBEiQAwkK52O55GG9fuuFPwGSfKF4ipWENUYrvJmaKuDEDtub7PmgaAqnq8P8HAQ

03/22/2025

Such a Blessed day today was! 10 years buddy! You made it 10 years! Happy Tansplant Birthday's! I absolutely LoVe you and am so darn proud of you!

12/30/2018

Here's Connolly 4 years and 1.5 months after diagnosis...boy have we come a long way! Everyday is a gift from God. Everyday a blessing. None of us know how long we have on this Earth. Enjoy everyday as if it's your last. Don't be afraid to take risks: ask that guy or girl out, try that new food...don't let fear hold you back. Remember it's YOUR life! May your New Year be as blessed as my life has been. Happy New Year!

04/19/2017

Things with Connolly have been up and down since our trip to the Grand Cayman last November. I also believe I am experiencing a bit of care taker burn out. Every time I go to type an update I stop and delete it all. I am so very frustrated. My heart breaks with each set back. I cannot make his ailments go away or get any better. All I can do is be there for him...hold him and comfort him. We have had big wins, but also huge losses. I love my son fiercely and see his light diminishing as of late. He's not sleeping well, he is in almost constant pain and he crys to me to fix it. He asks regularly to go to the hospital so they can fix it, but doesn't understand everyone is doing everything we can already. I take each day in stride. I am not looking past today into tomorrow. I pray to God to help me continue to fight and to give Connolly the strength to continue on.

Please bare with me as I find my footimg again. We are still fighting and haven't given up. I am just tired and beat down. I promise that as things turn around for myself I will get back to updates. For now we need your continued support. We need your prayers for Connolly and our family...

Fight Conquer Win

03/28/2017

Mini Update:

Connolly returned home this last weekend. His rashes flared horribly. Causing very raw and broken skin...leading to secondary infections. The good news is it was caught in time to avoid and serious infection. A few tweeks with his medicine and we will see where things sit Wednesday at his two year post transplant checkup. Until then.

Fight Conquer Win

01/10/2017

UPDATE:

Hospital life is tough as it is, but Isolation to top it off makes it just horrid. Having a severe case of the Varicella Zoster Virus (Chickenpox)is really stressful.

We received part of the results back from his Lumbar Puncture last Thursday. The results revealed that not only does Connolly have the virus in his spinal fluid, he also has it in his brain as an infection. The infection in his brain can cause the balance issues he’s been having, the blurred vision, extreme headaches and irritableness. He was kept on the i.v. antiviral medication. AN eye doctor came to see Connolly to see how the infection was affecting his eye(s). Luckily it hadn’t done too much damage and over the course of several months the eye issues should reverse themselves.

As the vesicles on his skin and scalp began to crust over Connolly began to experience worsening headaches and pain. His vision became blurrier and he became more irritable. By Friday evening, Connolly was not Connolly. It was as if he has a complete personality change. He was, for lack of a better word, MAD. He was a danger to himself and others. An emergency medication was administered to help calm him and get him to sleep some. Saturday, he needed to be seen by the on-call Psychiatrist. He agrees that Connolly needed to be kept on the calming medication…that he was having further side effects from the infection in his brain. It was a heart breaking and gut wrenching to watch him endure this. With the help of the medication he has been much better and has returned to a much more normal self.

As of today, the vesicles have dried up and he doesn’t appear to have any new ones. He is being switched to an oral antiviral medication. If he tolerates this well and we have no new sites show up he will be allowed to go home and remain on the antiviral medication. Once home we will still have to watch for new break out sites. Due to this being in his spinal fluid it will take longer to make sure this is squashed. After the course of oral antiviral things should start to return to normal. Unfortunately, just like the eye issues the side effects of the infection in the brain may take several weeks to return to normal.

Connolly remains a fighter and can still smile through the worst of it!

Hopefully this is our last crazy for a while! I am sure we could all really use a rest. Besides we have extended family members that are sick and need our attention as well.

As always, We FIGHT while we CONQUER until we WIN!

Fight Conquer Win

01/04/2017

Connolly has been back 40 minutes now for his PICC line surgery...No more pokes and I.V.'s at least for now...

01/01/2017

UPDATE:
As many of you know Connolly has been sick off and on since his Make-A-Wish Trip. We are unsure if it’s all linked to his Adrenal Crisis he experienced or a bunch of new things. Either way he has had a tough time at it. Earlier this week he began to get a rash on his scalp. It was red and itchy with fluid filled sacks…It looked like a bizarre form of chickenpox. I took him to the ER to be told that however viral it was it wasn’t chickenpox.
Fast forward to Friday…after a long and miserable Thursday to Friday night…I was asked to bring him to his Pediatrician. She felt that he was way too ill to remain home. Fast forward to Sunday…Happy New Year! Connolly has had two very rough nights. Saturday night he took a turn for the worse. As of now his medications have been switched to iv, on a rather hefty pain medication via iv and he is in isolation.
What’s been done so far: They have taken multiple vials of blood, lanced open one of his fluid filled bumps and sent it off to be tested. He has seen an eye doctor and Infectious Disease…not to mention HemOc and peds.
What we know so far: Connolly has swelling behind his left eye. It is causing blurred vision and pain. This most likely due to the virus that is causing the rash. It will take several months to right itself; The blood work finally came back and it is positive for Varicella (chickenpox virus), a very serious case; Connolly must undergo a spinal tap this afternoon to continue piecing the puzzle together. They are also monitoring an area(s) of his blood work that is concerning.
Connolly is miserable…between the itching, pain, fevers, throwing up and severe headaches/brain pain (as he calls it) …he is just yuck!

More to come as we learn more.
Fight Conquer Win

11/29/2016

This was Connolly Sunday afternoon! Still not feeling well, but looking so grown-up. Where has my baby gone?!?

It's funny how much I don't notice how he's grown. I tend to see that little 19 month old baby from when he was diagnosed...but this photo really shows how much he has grown.

In 5 short months he'll be celebrating his 4th birthday...just 11 days after we celebrate his two year birthday from transplant!

Even through all the ups and downs...He's my rock. This entire experience has taught me so much about myself and others. It's taught me to always find the silver lining in life and every situation we are faced with. We cannot change the hands we are dealt, but we can control how we handle the situation. Life is truly what we make it. I don't believe that my situation is any worse than another....a sick child is a sick child and just that. Thank you for being there for us in our times of need.

We Fight while we continue to Conquer until we Win!

Fight Conquer Win

11/28/2016

We came home early Sunday morning from the E.D. Connolly is dealing with many different ailments at this time. Unfortunately, to get the whole clinical picture it will take time. On somethings time will only tell and with others tests will need to be ran. Fingers Crossed!

Fight Conquer Win

11/27/2016

Connolly always finds his smile! He's in the emergency department being seen, but he still manages to smile!

11/23/2016

We're home!

This is a photo from our flight home. Connolly is still under the weather. We are going to continue his stress dosage with his steroids for a couple more days and hopefully we will see a turn around with his health. If we don't see an improvement he will go to see his doctors after the holiday.

I wanted to let you all know how much I have appreciated you continue support and concern over the last two years. Weve come so far from where we were!

Plenty of pictures to come of Connolly's trip.

During this Thanksgiving season I have so much to be thankful for in my life, including all of you. From our family to yours may you have the Happiest of Thanksgiving's!

In light of our the chaos I think a silver lining is well over due. My silver lining is that in the midst of our crazy trip we met many people with huge hearts full of love and compassion. The Grannd Cayman is full of wonderful people! They will forever be held in our hearts!

Fight Conquer Win

11/18/2016

Sorry everyone! Connolly is out of the hospital. We are looking at maybe Sunday to return home, as long as he remains on the upward swing with his health. Ultimately time will gell.

However...we do have to leave the resort tomorrow morning. Unfortunately, they are full here and we have to move to the other side of the island to the only hotel that has a room(s) big enough for us. We also lose our food package 😢. We will be purchasing food from restaurants the remainder of our trip. Not good! We got Broderick a 10 piece nugget and a small fry for $9.00 while Connolly osnstill in the hospital from Burger King...YIKES! 😱 But on the bight sode we will be closer to the hospital if he needs it!

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Connolly's Diagnosed Journey

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